A LITTLE AWARENESS

A little awareness can go a long way.

I was pleasantly surprised to hear that the Tidings , The Teddington Society Newsletter had included a warning about Lyme disease, it had been mentioned on Eurolyme by a fellow patient who had been treated in the local walk in clinic in that area.

I was even more surprised to find that my constant talking about Lyme disease had had some affect on my brother in law and he sent me the Tiddings with a note to say ' Have a look at the enclosed--- as I have been 'banging on' in this area about the problem of Lyme Disease since you were infected!

This was a good start in the right direction especially as Bushy Park and Richmond Park have not only been known areas where Lyme disease is endemic but they have been part of research done there in the 1990's on park workers, many of which were infected but without symptoms. I wonder how well those Park workers all are now, 20 years later and if it would even occur to them that health problems can sometimes relate to a tick bite many years earlier.

PROOF THAT CHRONIC LYME DISEASE EXISTS

I don't doubt that Chronic Lyme Disease exists, I had 6 1/2 years of chronic health with Arthritis, Muscle Weakness, Peripheral Neuropathies mis diagnosed as Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculoskeletal Disease, Poly Myalgia Rheumatica until a chance course of antibiotics improved my symptoms and led my GP to suspect Lyme disease. My story is in the right hand column of this blog.

My story is similar to many thousands of other patients and their treating specialist doctors World Wide. We are the living proof that Chronic Lyme Disease does exist, how many more thousands must suffer before medicine starts to pay attention to what is going on with the politics in the IDSA which results in their yet again flawed and biased views.

Thank you Daniel Cameron for this well researched article something that should be read by anyone with my symptoms because their doctors are unlikely to take the time to make their own enquiries.



http://www.hindawi.com/journals/ipid/2010/876450.html

Interdisciplinary Perspectives on Infectious DiseasesVolume 2010 (2010), Article ID 876450, 4 pagesdoi:10.1155/2010/876450

Research Article

Proof That Chronic Lyme Disease Exists
Daniel J. Cameron
Department of Medicine, Northern Westchester Hospital, Mt. Kisco, NY 10549, USA
Received 11 December 2009; Accepted 26 March 2010
Academic Editor: Guey Chuen Perng

Copyright © 2010 Daniel J. Cameron. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract
The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials. The risk to society of emerging antibiotic-resistant organisms should be weighed against the societal risks associated with failing to treat an emerging population saddled with CLD. The mixed long-term outcome in children could also be examined. Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Medical professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective treatment regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.

The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Thirty-four percent of a population-based, retrospective cohort study in Massachusetts were found to have arthritis or recurrent arthralgias, neurocognitive impairment, and neuropathy or myelopathy, a mean of 6 years after treatment for Lyme disease (LD) [1]. Sixty-two percent of a cohort of 215 consecutively treated LD patients in Westchester County were found to have arthralgias, arthritis, and cardiac or neurologic involvement with or without fatigue a mean of 3.2 years after treatment [2]. Klempner trials’ subjects presenting with “well-documented, previously treated Lyme disease…had persistent musculoskeletal pain, neurocognitive symptoms, or dysesthesia, often associated with fatigue” and were ill during a mean of 4.7 years after onset [3]. Fallon trial subjects presenting with “well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics, current positive IgG Western blot, and objective memory impairment,” were ill during a mean of 9 years after onset [4]. Krupp LD subjects presented with “persistent severe fatigue at least 6 or more months after antibiotic therapy” [5].

There is also evidence that symptoms of CLD can be severe [4–8]. The Klempner trials described the quality of life for patients with posttreatment chronic Lyme disease (PTLD) as being equivalent to that of patients with congestive heart failure or osteoarthritis, and their physical impairment was “more than 0.5 SD greater than the impairment observed in patients with type 2 diabetes or a recent myocardial infarction” [3]. Fallon et al. described pain reported by patients with Lyme encephalopathy as being “similar to those of postsurgery patients”, and their fatigue “was similar to that of patients with multiple sclerosis.” Limitations in physical functioning on a quality of life scale were “comparable with those of patients with congestive heart failure” [4].

Despite the above documented evidence, the 2006 Infectious Diseases Society of America (IDSA) LD treatment guideline panel questioned the existence of CLD [9]. The IDSA panel concluded, “Considerable confusion and controversy exist over the frequency and cause of this process and even over its existence” [9]. The IDSA panel referred to chronic manifestations of LD as Post-Lyme disease syndrome (PLDS), PTLD and CLD. There are shortcomings for each term. The PLDS nomenclature implies that an active LD has been successfully treated, that any remaining symptoms are merely harmless vestiges of previous illness, and that the patient has been cured. The term PTLD merely implies that LD has been treated with antibiotics for 10 to 30 days. The CLD nomenclature implies that chronic manifestations of LD are present with or without evidence of active infection that cannot be reasonably explained by another illness.
There is no objective way to rule out an active infection. Lab tests that can be very helpful in confirming a clinical diagnosis of Lyme disease (such as the ELISA and Western blot tests) are not useful in determining whether the infection has been adequately treated. Common LD symptoms such as Bell’s palsy, erythema migrans rash, meningitis, arthritis, or heart block, which are included in the current surveillance definitions, can be useful in “ruling in” Lyme disease, but the absence or disappearance of these symptoms cannot “rule out” an ongoing infection. A population-based, retrospective cohort study of individuals with a history of LD revealed that they were significantly more likely to have joint pain, memory impairment, and poor functional status due to pain than persons without a history of LD, even though there were no signs of objective findings on physical examination or neurocognitive testing [10]. Two recent mouse studies revealed that spirochetes persist despite antibiotic therapy and that standard diagnostic tests are not able to detect their presence [11, 12]. In sum, there are no clinical or laboratory markers that identify the eradication of the pathogen.

The IDSA panel also questioned the severity of CLD symptoms. The panel dismissed LD symptoms that persisted or recurred after their recommended, short-term course of treatment, stating that they were: “more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection” [13]. The panel came to this conclusion despite four NIH retreatment trials that validated the severity of symptoms on 22 standardized measures of fatigue, pain, role function, psychopathology, cognition, and quality of life (QOL) [9].
Denying the existence and severity of CLD will continue to hinder the efforts to find a solution. Even in a prospective trial of LD, 10 to 16% of patients treated at the time of an erythema migrans rash remained symptomatic a mean of 30 months after treatment; the results varied depending on the duration of antibiotics treatment [14]. The actual failure rate in this prospective at 30 months is uncertain, given that 38% of the subjects were not evaluable due to poor adherence, receipt of intercurrent antibiotics, or development of a second episode of erythema migrans [14]. Patients infected with many other kinds of common bacteria—such as those that cause tuberculosis, bronchitis, or UTIs—can experience relapses after an initial course of antibiotic treatment fails or proves inadequate. Doctors routinely retreat patients who relapse in order to achieve a cure and prevent chronic symptoms. Why should patients with Lyme disease be treated differently?

The treatment failure rates could be exacerbated by diagnostic delays. Feder described treatment delays of six weeks in LD patients initially misdiagnosed with cellulitis [15]. In his trial, Fallon noted treatment delays averaging 2 years [4] without examining the causes of the delay. In my own practice, 32% of a consecutive case series of LD cases (confirmed by an ELISA and 5 or more positive bands on a IgG Western blot) had an average treatment delay of 1.8 years. [16] Of these, 60% conformed to Centers for Disease Control and Prevention (CDC) epidemiological criteria, presenting with a rash, Bell’s palsy, or arthritis, yet, still had a diagnostic delay [16]. Patients in this case series were significantly more likely to fail their initial antibiotic treatment if they had delayed treatment [16]. Vrethem et al. concluded that patients treated because of neurological symptoms of LD were much more likely to present with persistent neuropsychiatric symptoms (headache, attention problems, memory difficulties, and depression) three years after treatment than a control group with erythema migrans (50% versus 16%, ) [17].

The diagnostic delays could reflect the failure to consider CLD in the differential diagnosis of chronic manifestations of LD. Steere did not include CLD in the differential diagnosis of patients seen in his university-based clinic. Instead, Steere diagnosed three-quarters of patients with “fibromyalgia” or “chronic fatigue syndrome” [18]. Similarly, Reid et al. did not include CLD as a diagnosis in their university LD clinic. Instead, he diagnosed these patients with “arthralgia-myalgia syndrome,” primary depression, asymptomatic deer tick bites, osteoarthritis, and bursitis [16]. Hassett et al. diagnosed PTLD in patients with a history of objective evidence of LD, but withheld it from patients who lacked such a history. Instead, this group was diagnosed with “Chronic Multisymptom Illness (MUI) [19]. Their case definition for Chronic Multisymptom Illness was: “ [having] at least one or more chronic symptoms from at least 2 of 3 categories of symptoms including musculoskeletal, fatigue, and mood cognition” that includes fibromyalgia, chronic fatigue syndrome, and Gulf War syndrome [19].

The risks to the individual and society of CLD have not been adequately considered [20]. As a group, CLD subjects in the four NIH trials had a 4% risk of a serious adverse event in the antibiotic treatment arms [4–6]. Yet, this risk has not been weighed against the risk CLD patients face if burdened with a long-term debilitating illness. The risk to society of emerging resistant organisms also has not been weighed against the societal risks associated with an emerging population saddled with CLD [8].

The economic burden of CLD has yet to be addressed. The mean cost estimate of CLD per patient in the US, of $16,199 per annum in 2002 dollars [8], reflects the toll on human health and cost to society. The annual per-patient cost of CLD is substantially higher than the cost for other common chronic illnesses: $10,911 for fibromyalgia [21], $ 10,716 for rheumatoid arthritis [21], and $13,094 for lupus [22]. Eighty-eight percent of the cost ($14,327) of Lyme disease consisted of indirect medical cost, nonmedical cost, and productivity losses. Cutting medical cost would save, at most, only 12% or $1,872 per annum. In 2002, the annual economic cost of LD in the US, based on the 23,000 cases reported to the CDC that year, was estimated to be $203 million [8]. Considering that the actual number of LD cases is believed to be 10 times higher than the number of cases reported to the CDC, the actual annual cost could be $2 billion [23, 24].
The burden of CLD is also reflected in testimony given by Connecticut’s chief epidemiologist before the state’s Public Health Department in 2004: “roughly one percent of the entire population or probably 34,000 people are getting a diagnosis of Lyme Disease in Connecticut each year20 to 25 percent of all families [in Connecticut] have had at least one person diagnosed with Lyme Disease ever andthree to five percent of all families have had someone diagnosed with Lyme Disease in the past year” [24].
No additional antibiotic trials have been planned for CLD patients despite the limitations of the Klempner and Fallon trials. Klempners’ trials were limited by: (1) uncertainty over whether the initial antibiotic treatment was effective, (2) ongoing illness despite a mean of three previous treatments, (3) long onsets of illness averaging 4.7 years, (4) the poor quality of life of the subjects, and (5) small, underpowered sample sizes of 51 and 78 subjects [25]. The Fallon trial had similar limitations including: (1) uncertainty over whether the initial antibiotic treatment was effective, (2) treatment delays averaging two years, (3) onsets of illness averaging 9 years, (4) the severe pain, fatigue, psychopathology, and poor QOL of subjects, and (5) a small underpowered sample size of 37 subjects. The IDSA panel did not suggest any further clinical trials to address these limitations. In an editorial titled “Enough is Enough”, which was published as a commentary on Fallon’s trial, Halperin, an IDSA panel member, actually advised against further trials [26].

There is also an urgent need to address the mixed long-term outcome in children. Eleven percent of children with facial nerve palsy had persistent facial nerve palsy causing dysfunctional and cosmetic problems at 6-month followup [27]. Fourteen percent of 86 children had neurocognitive symptoms associated with or after classic manifestations of Lyme disease on followup [28]. Five of these children developed “behavioral changes, forgetfulness, declining school performance, headache or fatigue and in two cases a partial complex seizure disorder” [28]. Children with prior cranial nerve palsy have significantly more behavioral changes (16% vs. 2%), arthralgias and myalgias (21% vs. 5%), and memory problems (8% vs. 1%) an average of 4 years after treatment compared to controls [29].
Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.

References

1. N. A. Shadick, C. B. Phillips, E. L. Logigian, et al., “The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study,” Annals of Internal Medicine, vol. 121, no. 8, pp. 560–567, 1994.
2. E. S. Asch, D. I. Bujak, M. Weiss, M. G. E. Peterson, and A. Weinstein, “Lyme disease: an infectious and postinfectious syndrome,” Journal of Rheumatology, vol. 21, no. 3, pp. 454–461, 1994.
3. M. S. Klempner, L. T. Hu, J. Evans, et al., “Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease,” New England Journal of Medicine, vol. 345, no. 2, pp. 85–92, 2001.
4. B. A. Fallon, J. G. Keilp, K. M. Corbera, et al., “A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy,” Neurology, vol. 70, no. 13, pp. 992–1003, 2008.
5. L. B. Krupp, L. G. Hyman, R. Grimson, et al., “Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial,” Neurology, vol. 60, no. 12, pp. 1923–1930, 2003.
6. M. S. Klempner, “Controlled trials of antibiotic treatment in patients with post-treatment chronic Lyme disease,” Vector Borne and Zoonotic Diseases, vol. 2, no. 4, pp. 255–263, 2002.
7. D. J. Cameron, “Clinical trials validate the severity of persistent Lyme disease symptoms,” Medical Hypotheses, vol. 72, no. 2, pp. 153–156, 2009.
8. X. Zhang, M. I. Meltzer, C. A. Pena, A. B. Hopkins, L. Wroth, and A. D. Fix, “Economic impact of Lyme disease,” Emerging Infectious Diseases, vol. 12, no. 4, pp. 653–660, 2006.
9. G. P. Wormser, R. J. Dattwyler, E. D. Shapiro, et al., “The clinical assessments treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America,” Clinical Infectious Diseases, vol. 43, no. 9, pp. 1089–1134, 2006.
10. N. A. Shadick, C. B. Phillips, O. Sangha, et al., “Musculoskeletal and neurologic outcomes in patients with previously treated Lyme disease,” Annals of Internal Medicine, vol. 131, no. 12, pp. 919–926, 1999.
11. E. Hodzic, S. Feng, K. Holden, K. J. Freet, and S. W. Barthold, “Persistence of Borrelia burgdorferi following antibiotic treatment in mice,” Antimicrobial Agents and Chemotherapy, vol. 52, no. 5, pp. 1728–1736, 2008.
12. H. Yrjänäinen, J. Hytönen, K.-O. Söderström, J. Oksi, K. Hartiala, and M. K. Viljanen, “Persistent joint swelling and borrelia-specific antibodies in Borrelia garinii-infected mice after eradication of vegetative spirochetes with antibiotic treatment,” Microbes and Infection, vol. 8, no. 8, pp. 2044–2051, 2006.
13. J. J. Halperin, E. D. Shapiro, E. Logigian, et al., “Practice parameter: treatment of nervous system Lyme disease (an evidence-based review): report of the quality standards subcommittee of the American Academy of Neurology,” Neurology, vol. 69, no. 1, pp. 91–102, 2007.
14. G. P. Wormser, R. Ramanathan, J. Nowakowski, et al., “Duration of antibiotic therapy for early Lyme disease: a randomized, double-blind, placebo-controlled trial,” Annals of Internal Medicine, vol. 138, no. 9, pp. 697–704, 2003.
15. H. M. Feder Jr. and D. L. Whitaker, “Misdiagnosis of erythema migrans,” American Journal of Medicine, vol. 99, no. 4, pp. 412–419, 1995.
16. M. C. Reid, R. T. Schoen, J. Evans, J. C. Rosenberg, and R. I. Horwitz, “The consequences of overdiagnosis and overtreatment of Lyme disease: an observational study,” Annals of Internal Medicine, vol. 128, no. 5, pp. 354–362, 1998.
17. M. Vrethem, L. Hellblom, M. Widlund, et al., “Chronic symptoms are common in patients with neuroborreliosis—a questionnaire follow-up study,” Acta Neurologica Scandinavica, vol. 106, no. 4, pp. 205–208, 2002.
18. A. C. Steere, E. Taylor, G. L. McHugh, and E. L. Logigian, “The overdiagnosis of Lyme disease,” Journal of the American Medical Association, vol. 269, no. 14, pp. 1812–1816, 1993.
19. A. L. Hassett, D. C. Radvanski, S. Buyske, S. V. Savage, and L. H. Sigal, “Psychiatric comorbidity and other psychological factors in patients with “chronic Lyme disease”,” American Journal of Medicine, vol. 122, no. 9, pp. 843–850, 2009.
20. D. J. Cameron, “Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients,” Medical Hypotheses, vol. 72, no. 6, pp. 688–691, 2009.
21. S. Silverman, E. M. Dukes, S. S. Johnston, N. A. Brandenburg, A. Sadosky, and D. M. Huse, “The economic burden of fibromyalgia: comparative analysis with rheumatoid arthritis,” Current Medical Research and Opinion, vol. 25, no. 4, pp. 829–840, 2009.
22. A. E. Clarke, J. M. Esdaile, D. A. Bloch, D. Lacaille, D. S. Danoff, and J. F. Fries, “A Canadian study of the total medical costs for patients with systemic lupus erythematosus and the predictors of costs,” Arthritis and Rheumatism, vol. 36, no. 11, pp. 1548–1559, 1993.
23. G. D. Ebel, E. N. Campbell, H. K. Goethert, A. Spielman, and S. R. Telford III, “Enzootic transmission of deer tick virus in new England and Wisconsin sites,” American Journal of Tropical Medicine and Hygiene, vol. 63, no. 1-2, pp. 36–42, 2000.
24. http://www.ct.gov/ag/lib/ag/health/0129lyme.pdf, p. 290, 2008.
25. D. J. Cameron, “Generalizability in two clinical trials of Lyme disease,” Epidemiologic Perspectives and Innovations, vol. 3, article 12, 2006.
26. J. J. Halperin, “Prolonged Lyme disease treatment: enough is enough,” Neurology, vol. 70, no. 13, pp. 986–987, 2008.
27. B. H. Skogman, S. Croner, M. Nordwall, M. Eknefelt, J. Ernerudh, and P. Forsberg, “Lyme neuroborreliosis in children: a prospective study of clinical features, prognosis, and outcome,” Pediatric Infectious Disease Journal, vol. 27, no. 12, pp. 1089–1094, 2008.
28. B. J. Bloom, P. M. Wyckoff, H. C. Meissner, and A. C. Steere, “Neurocognitive abnormalities in children after classic manifestations of Lyme disease,” Pediatric Infectious Disease Journal, vol. 17, no. 3, pp. 189–196, 1998.
29. M. Vázquez, S. S. Sparrow, and E. D. Shapiro, “Long-term neuropsychologic and health outcomes of children with facial nerve palsy attributable to Lyme disease,” Pediatrics, vol. 112, no. 2, pp. e93–e97, 2003.

MEDIA AWARENESS OF LYME DISEASE IN SCOTLAND

Good to see a sensible article in the Scotland on Sunday.

Health:http://scotlandonsunday.scotsman.com/spectrum/Ruth-Walker-39One-bite-from.6313746.jp

'One bite from this insignificant looking insect can lead to a disease that can take years to shake off'
Published Date: 25 May 2010
By Ruth Walker
SIX years after an innocent game in the Scottish countryside resulted in excruciating headaches, unbearable fatigue, gynaecological problems, tremors and even a fear that she might be dying, Janey Cringean is almost – ironically – out of the woods.
But along the way she has faced ignorance and disbelief from doctors and a Herculean battle to get the treatment that could cure her.
Cringean, a 48-year-old computer software consultant from Livingston, had Lyme disease, caused by a tiny tick bit she received while playing hide and seek with her niece and nephew in Beecraigs Park, West Lothian, in 2004. "A week later I got a spot on my hip and two days after that I woke up with the most awful vomiting that went on all day. It was endless. It felt like flu. I was really weak and shivering all the time."
Within a few days she was feeling better, but the rash – the size of a small coin – didn't budge. Her GP prescribed steroid creams and, when those didn't work, it was frozen off by a dermatologist. However, it kept reappearing, with accompanying pain. "I developed a multitude of symptoms, including unbelievable headaches, and bad pelvic pain. A year later I was almost incapable of getting out of bed. There were quite a few times I'd be lying thinking, I wonder if this could be the night I die.
"This is Tick Awareness Week (24-30 May), the start of the time of year we are most likely to be bitten. And although the figures are relatively low, we shouldn't dismiss the disease as irrelevant. Indeed, the rates of Lyme are significantly higher in Scotland than the rest of the UK, with positive test rates soaring from 86 in 2004 to 285 in 2008, the most recent available figures, though the number of actual cases could be much higher.
"It is a difficult disease to diagnose," says Stella Huyshe-Shires, chairman of Lyme Disease Action.
"It can look like a lot of rheumatic and neurological conditions and the blood test is not infallible. It's also a disease very few doctors have been aware of so if they see typical symptoms they don't recognise it.
"Caused by the bite of an infected tick – a brown/black eight-legged insect that can be no more than a tiny dot - it can be caught by anyone spending time outdoors, especially in long grass or woodland areas, from foresters and farmers to golfers, gardeners, walkers and orienteers. "I caught it in my garden," says Huyshe-Shires.
"The tick attaches to you and, as it does, it injects an anaesthetic so you don't feel the bite. You tend not to notice it for about 24 hours then the anaesthetic starts to wear off and you get a little itch.
"It's a tiny little thing – it can be as small as a full stop on a page. You can take it off but must not cover it with oil, burn it with a cigarette or do anything to put it under stress or it might regurgitate its stomach contents into you, which is the last thing you need! Pull it out with a fine pair of tweezers or a tick removal tool, which you can get from any vet.
"At this stage, there's no point in panicking because you may not be infected, but if you start seeing symptoms – anything from headaches, stiff neck and muscle pain to sensitivity to sound and light – you should go straight to your doctor.
"You can get cold or hot and have sweats or a kind of facial palsy," adds Huyshe-Shires. "You may get a rash, not necessarily at the site of the bite."
The disease can be treated by antibiotics, but diagnosis often takes time. "In a lot of cases people have gone to their GP and they've said it can't be Lyme disease because we don't have it in this country," says Huyshe-Shires. "I was three years before I was diagnosed."
After repeated requests, Cringean was finally tested for Lyme, and though the results were negative, she was prescribed massive doses of antibiotics – twice the level for anthrax poisoning. Five weeks later, she started seeing an improvement. But the irony is that such a high dose of antibiotics could cause organ failure. "It's terrifying," she says. "I don't know what the future holds.""I've been on antibiotics for more than three years. On the two attempts I made to come off I had such a severe return of symptoms it felt like falling off a cliff. So I'm terrified of coming off them, yet terrified of keeping on them. ."
As always, prevention is better than cure. Spray your trousers with a Deet-type product, says Huyshe-Shires. "And tuck your trousers into your socks, then keep away from long grass. Then be aware and check yourself afterwards. Brush off your clothes outside before you come indoors. Look for ticks in places like the groin and behind knees. They'll go for a slightly protected place – they tend to crawl up – and with children, they can get up to the hairline."
To find out more about the disease see www.lymediseaseaction.org.uk, and for information on dealing with ticks, see www.stopthetick.co.uk• This article was first published in Scotland on Sunday on 23 May

MEDIA AWARENESS

http://www.edmontonjournal.com/Lyme+disease+tricky+diagnose/3064838/story.html

Lyme disease tricky to diagnose

Number of cases may be under-reported because blood-testing not always foolproof

By Florence Loyie, Edmonton Journal May 23, 2010 10:00 PM

The number of Albertans with Lyme disease may be under-reported because the illness is often misdiagnosed, says an Edmonton board member of the Canadian Lyme disease Foundation.
Part of the problem is infectious disease specialists won't treat for suspected Lyme disease unless they have a positive blood test from an approved laboratory, said Janet Sperling, who is also a University of Alberta entomologist, and co-author of a submission to The Canadian Entomologist on the presence of Lyme disease ticks in Alberta.
Sperling said many local cases go undiagnosed partly because she believes local labs give out too many false negatives.
In 2005, her oldest son, Ed, then 15, contracted Lyme disease, likely on a family vacation in California. He was tested for a number of diseases ranging from Parkinson's to epilepsy by local doctors. Three tests done in Alberta for Lyme disease came back negative.
When Sperling and her husband sent Ed's blood to a California lab, it came back positive for Lyme disease. But local doctors remained skeptical even though Ed's condition continued to deteriorate, she said.
It was not until late 2005 that a doctor reluctantly put Ed on three months of intravenous antibiotics, followed by six months of oral medication. Ed has since made a full recovery.
Between 1992 and 2006, 19 cases of Lyme disease were reported in Albertans, all who had travelled to eastern Europe or the east coasts of Canada and the United States, where ticks carrying the bacteria are common.
Sperling said her son is not listed among the Alberta statistics even though the California lab gave him a positive result and the antibiotic regime cured him. That's because the provincial health office insists a blood test to come back from the laboratory with five positive indicators to define Lyme disease. The European standard requires three.
The disease is rarely fatal in humans but can cause fatigue, fevers, headaches, severe arthritis, abnormal heart beats and other symptoms if left untreated with antibiotics.
The first sign is often a circular rash, called a bull's-eye rash, where the tick has bitten and burrowed. The ticks start out the size of a freckle, but can balloon up to the size of a grape after a bloody meal.
In 2007, provincial health officials confirmed the western blacklegged arachnid had been found in Alberta. Unlike Alberta's moose tick and other local varieties, the western blacklegged arachnid is known to carry the bacteria that causes Lyme disease.
Last week, Alberta's chief veterinarian, Dr. Gerald Hauer, said he was informed that three ticks found by a provincial surveillance project were positive for the bacteria. One tick was found in the Ardrossan area, just east of Edmonton. The other two were found near Calgary and High River. All were collected in the last three weeks. They were tested at the Public Health Agency of Canada's Winnipeg lab.
Sperling said she disagrees with the government's finding that Alberta's first identified Lyme disease carrying tick was found in 2007. "There had been a positive (Lyme disease) tick found in Grande Prairie in 1994," she said, adding she has supporting documentation. Sperling said the foundation has waged an awareness campaign for years to get the message out that you can contract Lyme disease anywhere in Canada, including Alberta. "Alberta has been a particularly tough spot to get the diagnosis for humans," Sperling said. "This is really strange because the vets don't seem to have a problem with saying we recognize we have Lyme disease in Alberta."
Linda Laidlaw's oldest daughter, Xian, contracted Lyme disease as a four-year-old, but was never diagnosed in Canada. "We had to travel to the U.S. for diagnosis and treatment ... and spent over $50,000 to help her recover, none of which has ever been reimbursed," Laidlaw said in an e-mail. "At the height of her illness, I was told that she had an incurable degenerative neurological illness that was likely a rare form of late onset autism or an unknown genetic illness and that there was nothing more her doctors could do.
"By then she'd been ill for about six months. She had lost her ability to communicate and her cognitive skills as well as suffering from myriad physical problems," she said.
Her daughter spent a month in the Stollery Children's Hospital being tested, although never for Lyme disease, and was seen by over 20 pediatric specialists. She also spent three weeks as an in-patient in the Royal Alexandra's secured child psychiatric unit.
Laidlaw said she was sitting in the hospital reading The Journal when she read a story about Ed Sperling and decided to contact the family.
Once Xian began receiving antibiotic treatment for Lyme disease and tick-borne co-infections, her daughter began to get better and continues to improve daily. Xian is now six years old. "If only one of the many doctors who had seen her had known to diagnose Lyme or even just suggested it to me as a possibility, my daughter and our family would have been spared from the ensuing years of pain and difficulty, from which we are still trying to recover," she said.
Laidlaw said she is not sure where Xian contracted the disease but it was either in Alberta or British Columbia because she has never travelled to any U.S. areas where the ticks are found. "The irony of this story is if I had a dog with Lyme disease, I would be more likely to get treatment for it in Alberta than for my child," Laidlaw said.
Sperling said the foundation's goal is to convince the infectious disease medical community that even if a blood test comes back negative for Lyme disease, the patient should begin an antibiotic regime based on their symptoms and history.
Dr. Gerald Evans, president of the Association of Medical Microbiology and Infectious Disease Canada, said in a November 2009 news release that the organization's doctors are at the forefront of antibiotic resistance issues and are confronting the overuse and misuse of antibiotics.
"We must consider the potential serious side-effects of inappropriate antibiotic use for unproven (Lyme disease) including: Clostridiumdifficile-associated disease, life-threatening drug interactions and antibiotic resistance," Evans said in the statement, released in response to a CTV W5 investigation into diagnosis of Lyme disease in Canada.
Evans added that in 2005, the U.S. Centres for Disease Control and Prevention questioned the validity of some American laboratory tests for Lyme disease that use a diffe-ent standard for interpretation. The tests costs hundreds of dollars and are billed directly to the patient.
"This is cause for skepticism," Evans said. "Furthermore, some American doctors who claim to be (Lyme disease) specialists do so without any requirement or regulatory authority to verify their credentials or any established standards for claiming such a title."
Dr. Andre Corriveau, Alberta's chief medical officer of health, said last week he was alerting the medical officers of health throughout the province of the three ticks recently found. Corriveau said anyone spending time outdoors should wear insect repellent, long pants and enclosed shoes when walking in tall grass, woods or bush.

It is time there was more awareness in our National Press here in the UK too.

An earlier post click here
gives a link into a W5 program

Also an earlier post Research by the Sperlings click here


http://pubservices.nrc-cnrc.ca/rp-ps/inDetail.jsp?jcode=ent&vol=141&is=6&lang=eng

Abstract: Lyme borreliosis (LB), also known as Lyme disease, is emerging as a serious tickborne illness across Canada. More than three decades of research on LB in North America and Europe have provided a large, complex body of research involving well-documented difficulties at several levels. However, entomologists are well situated to contribute to resolving some of these challenges. The central pathogen in LB, the spirochete Borrelia burgdorferi Johnson et al., includes numerous genospecies and strains that are associated with different disease symptoms and distributions. The primary vectors of LB are ticks of various Ixodes Latreille species (Acari: Ixodida: Ixodidae), but questions linger concerning the status of a number of other arthropods that may be infected with B. burgdorferi but do not transmit it biologically. A variety of vertebrates may serve as reservoirs for LB, but differences in their ability to transmit LB are not well understood at the community level. Persistent cystic forms of and immune system evasion by B. burgdorferi contribute to extraordinary challenges in diagnosing LB. Multiple trade-offs constrain the effectiveness of assays like ELISA, Western blot, polymerase chain reaction, and microscopic visualization of the spirochetes. Consequently, opportunities abound for entomologists to contribute to documenting the diversity of the players and their interactions in this devilishly complex disease.

AWARENESS CHILDREN MIS DIAGNOSED

What I find most troubling about the denial over Lyme Disease is that children are failing to be treated for tick bites, bulls eye rashes and allowed to develop chronic ill health. Worst still our specialist doctors are not picking up on the Lyme Disease because of the problems over denial.



In the UK I have been in touch with several parents of young children whose children have fallen between the cracks.



I visited one whose daughter had such terrible head pain that it caused her to scream I was there during one of her episodes which was truly heartbreaking to hear. She had had three major operations on her head including one at the base of her brain in order to control these symptoms and had been ill since she was 15 . Now 10 years later she still suffers and has other symptoms of Lyme including Arthritis.



Her Neuro consultant said we would look a bunch of charlies if it turned out to be Lyme disease.



Well it did and yet even so the denial is still causing problems over treatment.



The saddest case is that of Lewis Jeynes a perfectly normal happy little boy at 2 who was bitten in France whilst holidaying there. Gradually his health deteriorated so that he can no longer use his arms, legs, is tube fed and has seizures. Diagnosed with Lyme Disease and some improvements on antibiotics but still his NHS doctors are in denial. I do hope they can get some specialist attention soon.



One mother had been told there was nothing wrong ( the tests showed this)and if she persisted with her enquiries privately they would be looking at MBP.



Specialist Lyme Doctors are finding in children symptoms can present as Obsessive Compulsive Disorder, Attention-deficit Hyperactivity Disorder or Autism.



Others parents have taken their children to the USA to see the only paediatric doctors available who know enough about Lyme Disease.



It is not safe for them to talk openly about their case because of the very real threat of MBP so I will post something I found on Google Alerts today which so highlights what many parents are experiencing.



What of the children that never get diagnosed ?



http://www.the-daily-record.com/news/article/4829726



Sentimental Journey Sophie's suffering



about 24 hours ago
The daylight was fading from the late winter sky when the phone began ringing.
"Can you talk to a woman from New York who needs help?" my dear friend, Marjorie began. "You see, my sister is the family nurse. Their little girl is very sick with Lyme disease."
How well I knew that scenario.


A few minutes later, I was on the phone with Mindy, a mother I'd never met, whose child, Sophie, was crying desperately in the background. That's when Mindy began telling me her story.


The first tick bite seemed unimportant back in 2008. A second tick found in Sophie's scalp a few months later was not unusual either. Their family physician checked the child and said not to worry. After all, the eastern seaboard is well-known for its tick population. Sophie seemed OK after the two occurrences. Sure there was a rash, but she seemed fine. Until months later when Sophie began having headaches that left her doubled over. Until she was suddenly unable to walk. What happened to their once-healthy child?


Mindy began seeking help immediately, traveling from doctor to doctor. I was not surprised that even in New York state, where Lyme disease and other tick-borne illnesses are more easily recognized, little connection was made between the neurological symptoms Sophie was experiencing and the reported tick bites. One doctor ran Lyme tests when every other test came back negative. The preliminary Elisa test came back only mildly positive. The Western Blot came back inconclusive. But by then, little Sophie was neurologically impaired. She was admitted to a psych unit when the headaches left her screaming, when she could no longer use her legs.
I was called to comfort Mindy, because only a mother knows another mother's pain.


By the time we spoke, Mindy had done her homework. A medical follow-up with an ILADS physician had been scheduled. An antibiotic had been started.


"What can I do to help Sophie?" Mindy inquired, her voice breaking.
"Follow your instincts," I began. "Your child is gravely ill. Don't stop till you have answers. And always pray to God for guidance. He will be there when everyone else walks away." I could hear Mindy crying. Her daughter had finally settled. I wiped away a tear, remembering.


Mindy and I established a routine in the next few months, on the phone and then via e-mail. We told each other our stories. The Lyme-literate doctor she consulted confirmed the tick-borne illness. After all the doctors they saw, even several neurologists, one finally listened. One properly diagnosed the child. With the strange symptoms accompanying the disease, no two cases are ever the same.


Mindy told me about the day Sophie was infected several years ago. How her hairdresser found the first tick. Her husband found the second. I thought about how that insidious, invisible pathogen slowly but surely integrated itself in Sophie's small body, how as the bacterium multiplied, the subtle symptoms were dismissed until the neurological damage could no longer be ignored.


The last time Mindy wrote, Sophie had taken a few tentative steps in physical therapy. The headaches were finally abating. The treatment: a long-term antibiotic regimen.


"Sophie laughed today," Mindy told me in that last e-mail.


I knew exactly what Mindy was thinking. Sophie's laughter, a sound she once took for granted, had become the most precious sound in the world.


Remember, May is Lyme Awareness month in Ohio. This disease has grown to epidemic proportions. Most patients don't remember seeing a tick bite or rash. But if you fear infection, contact an ILADS physician for treatment today.

AWARENESS THAT BLOOD TESTS ARE NOT DEFINITIVE

Blood tests for Lyme Disease are not definitive.

The makers of the test kits which are used in the UK are Trinity Biotech.
They say
'The Trinity Biotech EU Lyme + VlsE IgG Enzyme Immunoassay (EIA) Test System is a qualitative test intended for use in the presumptive detection of human IgG antibodies to Borrelia afzelii, Borrelia garinii, and Borrelia burgdorferi(B-31) including the VlsE Protein in human serum. This EIA system should be used to test serum from patients with a history and symptoms of infection with Borrelia. All positive and equivocal specimens should be re-tested with a highly specific, second-tier test such as Western blot. Positive second-tier results are supportive evidence of infection with Borrelia. The diagnosis of Lyme disease should be made based on history and symptoms (such as erythema migrans), and other laboratory data, in addition to the presence of antibodies to Borrelia afzelii, Borrelia garinii and B. burgdorferi(B-31) including the VlsE protein. Negative results (either first or second-tier) should not be used to exclude Lyme disease.'

Here are 103 studies on Seronegativity from Lyme Info a very useful resource.

At the IDSA review hearing Steven Phillips presented 25 studies on Seronegativity and Persistent infection after courses of antibiotic treatment. Other presenters questioned the over reliance on tests that some research shows can miss up to 50% of cases.
Details of presentations can be found on ILADS website here

Interestingly of the IDSA review panel 4 out of 8 of that panel had a problem over the blood tests yet what did the IDSA do, rubber stamp the guidelines and disregard the 4 Doctors who were concerned about the science supporting that blood tests could be nearly 100%. The Calda Blog sets out the problems well.here

My symptoms were Arthritis and muscle weakness mainly but also tingling and twitching in my hands feet, legs and face, a constant sore throat for several years and the worst symptom was swallowing problems dysphargia.

I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal disorder, Polymyalgia Rheumatica and eventually Lyme Disease.

I never tested positive for Lyme Disease but then 20 months of steroids for the PMR diagnosis would probably have skewed the results as would the antibiotic treatment received. However I did have two bulls eye rashes, the hall mark of Lyme, but sadly missed by the Locum doctor I saw. My GP was advised by Sue O'Connell the Head of the Lyme reference unit to stop antibiotics. When I did my symptoms deteriorated and so GP put me back on them.

Thank goodness the GP followed her own instincts and continued to treat me and I continued to improve, otherwise I doubt I would be enjoying my current good health.

DR OZ ON AWARENESS

Click the picture and it takse you to the video of the show.


You have 36 hours to act after a tick bite. Do you know what to do? Learn proper tick removal technique and lyme disease prevention.



Lyme Disease Prevention Tips



Cover skin in grassy/wooded areas.



Use insect repellent: 10-30% DEET or a natural alternative, oil of lemon-eucalyptus.



Wear light-colored clothing. It will be easier to spot ticks this way.



Check your pets. They can bring ticks into your home.



Shower! Ticks don’t bite immediately; they walk around the body looking for a “perfect” spot. Showering can preempt the bite. .





http://www.doctoroz.com/videos/avoid-bite-lyme-disease